Stories help caregivers with problems of Alzheimer's

Paul Divinigracia does not consider himself a saint. But to observe how he cares for his wife, Virgie, now 11 years into Alzheimer's disease, you might think otherwise.

The Divinigracias celebrated their 50th anniversary in August. At 75, Paul Divinigracia still calls his 87-year-old wife "dear," and he clearly means it, even after he has answered the same question a dozen times within a few moments.

There is no question that being the full-time caregiver of a family member with Alzheimer's or any other form of dementia requires constant adjustments. New challenges frequently arise. Divinigracia's latest is trying to persuade his wife to bathe.

"Sometimes I offer a reward, like telling her, 'We're going out for lunch or dinner, and the restaurant won't let us in unless we smell good,'" he said.

Divinigracia could easily have been the subject of one of the 54 stories in a new book, "Support for Alzheimer's and Dementia Caregivers: The Unsung Heroes," by Judith L. London. London, a psychologist in San Jose, Calif., based each of the stories on situations confronting caregivers she has encountered, offering suggestions that could help others in similar circumstances.

The challenges include convincing patients or other relatives that something is really amiss, that lapses are not only a result of the gradual decline in memory that can accompany aging, as well as keeping people with dementia from slipping unnoticed out of the house and getting lost. (Double deadbolts on all the doors are a common and effective deterrent.)

"I have to be very observant of what's going on at all times," Divinigracia said. "She's become very obsessive about safety, constantly checking to be sure all the doors and windows are locked and plugs are unplugged, and wanting to take out the garbage."

One day, after putting garbage in a pail outside, Virgie Divinigracia forgot where the house was and had to be brought home by a neighbor.

"Caregiving is an act of love, even for paid caregivers," London said. "You put so much of yourself out there all the time, especially with Alzheimer's patients. The average span of the disease is seven years and it can go on as long as 20 years, and the challenges only increase with time."

London worries a lot about the stress on these caregivers, and rightly so. According to the data from Stanford University and the Alzheimer's Association, more than 15 million people provide unpaid care for family members or friends with Alzheimer's disease or other forms of dementia. The strain of the task has been shown in many studies to increase the risk of a variety of illnesses, and even death.

Paul Divinigracia loves to travel, and he has discovered that taking trips stimulates his wife in a positive way.

"Her attention span increases, and information is better retained from the new places we visit," he said.

On a recent drive from Fremont, Calif., where they live, to Seattle for a family event, they passed through beautiful mountains north of San Francisco.

"She just loved that and can recall it, even though she can't remember what I told her two minutes ago," he said. To maximize quality time together in whatever time they have left, he's planned trips to Hawaii in April and Europe in September.

Sometimes, though, returning to an old activity can be stimulating and fun. In one of London's stories, a caregiving wife gets her husband, who has serious dementia, to again enjoy golf, his former passion, by saying she wants to play. Once at the driving range with club in hand, he suddenly remembered what to do and sent the ball flying.

The message: "Once you get him started, he may still know how to do something he could do years before. What a thrill!" London wrote.

Likewise, there may be ways to awaken pleasant memories through new experiences. London tells the story of a woman who picked a sprig of rosemary during a walk around a lake. The smell reminded her husband of how much he liked her rosemary chicken, and he said so in the first complete sentence he had spoken in months.

One of the most common, distressing challenges faced by caregivers occurs when dementia patients become agitated or physically or verbally abusive, situations that are emotionally exhausting and sometimes dangerous for patients and caregivers alike.

Laura N. Gitlin, a professor at the Johns Hopkins School of Nursing, works with a team of occupational therapists to find ways to cope with such situations without drugs. They prescribe activities that patients and caregivers can do together tailored to the patients' abilities, needs and interests. The result is patients who are calmer, safer and more engaged, and caregivers who are less stressed.

Still, there are times when even the most astute and clever caregiver fails to overcome a challenge, particularly when an Alzheimer's patient becomes violent.

When one woman's husband seemed possessed by demons, screaming curses and menacing her with a knife, London wrote, she finally realized that she could no longer care for him safely at home. Reluctantly, she had to place him in a home so that both of them could be safe.

From conversations with others and participation in a semimonthly Alzheimer's Association support group, Divinigracia knows that the worst is yet to come. He continues to learn effective ways to cope with the challenges that arise, and how to take them in stride.

Still, London said, "caregivers are often the casualties, the hidden victims, of Alzheimer's disease. No one sees the sacrifices they make."

It is vital for caregivers to take good care of themselves, she added, by exercising, eating and sleeping properly, and getting respite care when needed.

Jane Brody

Jane Brody reports on health for the New York Times.

Last modified: February 28, 2014
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